This Is About Execution, Baby

New business ventures succeed only if they have a strong business plan. You must find or create a need for your product. And then you must latch on to that need and promulgate it over and over until it becomes a necessity... stitch it into the fabric of your culture... make it the gold standard.

And that is exactly what the companies Sequenom and Verinata are doing with their prenatal blood tests that can indicate whether or not a fetus has Down syndrome. They are capitalizing on old fears, outdated ideas and stereotypes, and the need for a perfect child to the tune of an estimated 2 billion dollars a year.

Today www.xconomy.com published an article, written by Luke Timmerman, touting Verinata’s release of their version of the MaterniT21 blood test developed by Sequenom,

"The promise of this eventual capability has been in play for more than 20 years. Now when it’s finally here, there’s a wonder and awe in the community,” says Caren Mason, Verinata’s CEO.

Awe and wonder... I don’t think that is what I feel. Pissed off is what I feel. If you have time, go read the article. It provides the most straight-forward admission of what this push for prenatal testing is about, money. I am not against prenatal testing but I am against pressure to get prenatal testing and/or to terminate based on the results of testing.

The company has hired genetic counselors to help doctors with communicating results to patients, and has people working on economic impact, which it hopes will persuade insurers to cover the cost of the test over time, Mason says.

Ms. Mason, it strikes me that there is a strong conflict of interest in your statements. The only way you convince insurance companies that covering the cost of your test is economically sound is to ensure them that the results of such testing will lead to the terminations of “medically expensive” children. So, to make your test worth it’s cost, your genetic counselors need to help doctors communicate to pregnant women that they should abort their babies with Ds.

It is beyond unethical for these companies to hire people to “help” doctors communicate with their patients. That kind of manipulation for financial gain should be illegal. I am pro-choice but to me that means a completely informed choice not a “choice” pressured by a doctor pressured by a genetic counselor hired by a company making billions off the whole scheme.

Don’t go running to invest your money quite yet as Timmerman goes on to write,

There are a million things that could sink the endeavor, whether it’s competition, litigation, insurance resistance, or physician skepticism. There’s even potential for political and moral debates to sidetrack the company, as people argue over whether it’s ethical to use this kind of information to potentially abort a fetus.

While it might be ethical to use information about your fetus to decide if you want to continue the pregnancy, it is not ethical to insinuate that people with Down syndrome are too expensive to allow them their lives.

What else is not ethical? The constant articles dredging up (in a positive way, you know, with the intent of putting them to rest) old statistics, stereotypes, labels, and fears that serve to reiterate a negativity around Down syndrome.

And what I view as most unethical is a doctor or diagnostics professional not sharing the readily available information that gives a woman the freedom to research and educate herself about the baby she is carrying and what its life might be like.

Sadly, Mason does not seem to let ethics get in the way of money making,

She sounds deeply determined to get this one right. “This is about execution, execution, execution,” she says.

Yeah, Mason you got that right.

So here is my question readers, should companies like Verinata and Sequenom be required to share the results of their "economic impact" studies and the genetic counselors' coaching plans that will be used to "help doctors communicate with patients" with the general public?

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In case you don't have time to read the article, here is my "favorite" comment on it so far. I wonder exactly what "it" is that he wants people to think about.

I reckon the biotech segment is pretty hot right now. Why is this guy not writing the article about Sequenom? Really…..Think about it………….$$$$$

Curebie

Curebie... I had never heard that insult before. A blogger I read, Jo Ashline who tells it like she feels it over at “A Sweet Dose of the Truth,” apparently pissed off a bunch of people and got herself labeled as a curebie (as well as a whole bunch of other things).

I guess she earned this by getting all excited that her kid (nine years old with Autism) read his first word, and she yelled out something celebra-trashy along the lines of “Autism can suck it!” Once I started reading the comments and ensuing posts, connected posts, and rebuking posts, I realized that the Autism community is fractured much like the Ds community.

A couple years ago I wrote a post questioning whether or not I would get the “cure” for my daughter if one became available. The answer turned out to be a solid maybe.

Kimani was just nine months old when I wrote that post. Now three years later, I have a different answer. A resounding “Heck yeah!” (as long as it didn’t come with risks... I don’t take risks with Kimani, I just don’t.)

Does that mean that I don’t love her or accept her? No, it means I can separate the effects of an extra 21st chromosome from the other 46. I don’t see a possible cure as something that would be a magical re-do where Kimani swallows a pill and wakes up with 46 chromosomes and an altered face. A “cure” would likely be something that ameliorates the day-to-day effects of that extra chromosome. Maybe it would take away the risk of Alzheimer’s and the inability to articulate speech and replace it with for twenty or so IQ points. That is why I support organizations like Down Syndrome Achieves that are advancing research, legislation, and education for people with Ds.

Does that mean I don’t view Down syndrome as a blessing? Yup, I don’t. I do, however, think of my daughters as blessings. You understand... I don’t see my daughters as Down syndrome, instead I see them as people who have some differences caused by Down syndrome. Some of those differences are quite endearing and valuable, and I consider myself fortunate to experience a close relationship with my girls. So while I have been blessed by the people in my life who have Down syndrome, I don’t think them having Ds in itself is a blessing.





You know what I would like a magic pill for? TBI... traumatic brain injury... the result of meningitis, or high fevers, or deep freezes. To all the pediatric neurologists out there, please please I beg you, make me a Curebie.

Boy Cookies

Winter break 2012 is over and four out of my five children go back to school tomorrow. Over dinner my husband asked the boys what was the best part of this vacation. What was the most fun?

They stared blankly across the table at us.

Clearly we didn’t go to Disneyland, or to the beach, or anywhere fun at all.

We parents made attempts to spark ideas for answers... “Remember you went to Daddy’s work for the day?”, “Remember you went for a ride in the van to go pick up the new t.v.?”, and oh thank God an actual event... “Remember the hockey game Daddy took the Gecko to?”

“Oh yeah, yeah... Dad’s work was awesome,” big smiles. Kids are so dang willing to love you.

Daddy’s work, a hockey game with Dad, going on a road trip with Dad. Mommy is feeling a little crappy right about now. Yes, I cooked for them, read with them, brushed their teeth and kissed their boo boos, but I didn’t DO anything at all to make the vacation special. Nothing. Nada.

A roll of Pilsbury Sugar Cookie dough, two squeezy bags of icing, and a bunch of sprinkles fixed it. Just like that (snap your fingers with me my friends) there is something great to remember about this school vacation.

I think they did a great job decorating their cookies. They look just like they should look. Forget those blogs where you see cookies made by girls... cookies that look too pretty to eat... Martha Stewart-style cookies. These are boy cookies!



They were very patient and did not whine excessively while I took photos of our grand sugar cookie production.



The girls were busy enjoying a bath during the cookie making adventure, but once Kimani was out she was very insistent about getting one. She said and signed cookie...



And when I gave her a piece of one, she proceeded to enjoy it in the most delightful way.



Yup, tomorrow morning they go back to school... tired, strung-out, with a cookie in each of their snack bags. And mommy and Autumn will be home alone with a big tray of cookies... um yum yum.

The Doll

As cute as Kimani was climbing into the babydoll stroller, I had a feeling it would end badly. And sure enough after I took a whole slew of adorable photos, she decided to climb out. Before I could get to her she went head first, crashing to the floor. Oops.

Shallot Therapy

Faint lavender skins burst under polished blade
(heavy-handled, carbon-steel, razor-sharp friend)
releasing potent fragrance into the air,
provoking fraudulent tears.

Oil and butter sizzle in lustrous pan
(heavy-duty, stainless-steel, All-Clad ally)
awaiting crisp secret circles chopped to pieces,
Sing shallots, sing your delightful swan song.

Anonymous said...

The following is a response to my Question of Faith post. One of the best things about blogging is hearing other people’s thoughts on the things that matter to me.

"Leaving God out of this story entirely.... there is a human in the world by the name of Kimani and she may have to live her life more instinctually than thoughtfully, and you will be the observer. You will be the guide standing by to steer her life in some direction. She and you will be one in so many ways. If you had certain dreams and desires for the future of this child, they are changed.... so where do you look when you look into her future; into the mystery of her? Maybe someday you will see a grand purpose for her life on earth... maybe not, but there she is. She just is. Her hand is always in your hand. There is no explanation for Kimani. There is no explanation for love... love just is."

Anonymous has got me thinking about my dreams for Kimani.

Justified

In June of 2010, two years after my daughter’s birth and subsequent heart-wrenching hospital stay, I wrote a post about how the smell of fresh cut grass triggered an uncontrollable reliving of the trauma I experienced during that time. I wondered when I would be free of this uninvited flashback into Hell.


I believed it was somehow my fault because I have never been able to force myself to throw away the stitches, tubes, and other bits and pieces of her that I saved. I have not found a way to “get over it” and heal. Therefore I concluded that I must be weak and perpetually broken. How could I not logically or emotionally separate a flower from a bruise?

Now I know how it works.

“At any juncture where the mind becomes overwhelmed and cannot take in the enormity of a tragedy and its sweeping implications, imagery of details can be frozen for future recall. That is, details can become vividly “wired in” and so represent the totality of the traumatic event. They are then intrusively and involuntarily replayed as a result of triggers, both conscious and unconscious, internal and external. Once underway, these flashbacks are usually next to impossible to interrupt. Potential triggers can be almost anything... (fresh cut grass) Flashbacks are multisensory and often include exquisitely detailed features of the scene of the moment of reckoning when life became drastically changed.” Susan Roos, Chronic Sorrow, A Living Loss.

Now I don’t fear it anymore. I just let it roll over me until it is done. And first chance I get I go hug my girl and breath in her soothing life scent.

A Question of Faith

A while back I wrote about how I had an epiphany that there is no God. At the end of the post, in the comments, I was asked if my faith is conditional.

I suppose if I once had it and then I lost it, and then maybe I started to rebuild it... maybe it is conditional. But it wasn’t really faith I was talking about. It was belief. For a while there, my belief in God was suspended.

I realized of course that like Job, I still believe, but my relationship with God is crippled. Partly because I am a crappy Christian, partly because you are crappy Christians, but mainly because my daughter has brain damage.

Can I tell you how many Christians have said to me with a big Christian smile, “God made Kimani “special” and chose you to be her mom”? Had it just been Down syndrome, I might have able to buy into that platitude. Lucky me, lucky Kimani, we are so privileged and special.

And in some ways, it would be true (even though you speaker of platitudes didn’t really know it from experience or believe it with conviction) because Ds is really normal everyday life in slower motion and without the normal capacity for evil behavior.

God made Kimani have brain damage. Are you going to say that too? God let Kimani have brain damage. God did not protect Kimani from brain damage. Maybe July 27, 2008 was a really busy day for Him and oops He overlooked her.



It is really hard to go around being Happy-go-Christian when you are furious with God. It is hard to listen to other Christians' platitudes, and to overlook their sinful actions when they are exclamation points in my dear john letter.

What is faith? If the question is actually one of belief, then yes I believe that God exists. But if the real question is do I have faith that God is all-loving and that everything He does is for our good? No, I don’t think I am confident in that concept any longer.

Eventually will the bigger picture prevail on me? It may.